Starting Chemo January/February 2025
Let's all join together here for support 😍
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Starting chemo in a couple weeks. I think T/C is what I'm having (if I understand the abbreviations correctly).
Getting this started with my oncologist's office has been the worst. Originally, I thought I wasn't going to need chemo. Then she said test results showed it could lower the risk of recurrence, although I'm still not clear on how much it will lower it. She was going to run it by colleagues to get a consensus then let me know. They set me up for a phone appointment a few days later. She called two hours before that time while I was away from my desk at work. Left a message saying I should do the chemo and I could start in a week. I called back and left a message with staff saying that was too soon, I needed time to process, etc. A week later I still hadn't gotten a call back. I left another message. Nothing. Finally, I decided just to call the office and say I needed to set up an appointment to start chemo. So now I'm on the books. But I'm still not confident with the way this all rolled out.
I want to try cold capping so I'm going in to take care of all that (whatever that means) a week before my appointment date. The person who scheduled me was concerned that was too close to the date, so if she's right, I'll have to decide whether to forego cold capping or delay my chemo further.
I can't help but think providing a simple one page "where do I go from here" handout that they give you could alleviate a lot of stress around this process. I guess the good part is I've been so busy dealing with the administrative nonsense, I haven't started thinking about the realities of the treatment yet.
Maybe this is typical but I sure hope not!
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Hi everyone, just want to introduce myself to this group. I technically started chemo in December 2024 but there isn't a thread for that month. I'm on Fluorouracil, Epirubicin, and Cytoxan every 3 weeks. I've had 2 rounds so far. The first round was quite rough but they tweaked my anti-emetics and other supportive medicines and this round has been better. I switch to Doxcetaxel (Taxotere) after my next round and am interested in seeing how the side effects change between regimes.
@bonkster I can't figure out how to reply to your post but I'm so sorry you have had such an awful experience with your cancer centre. I know there are some great resources on this forum about different regimes and even though we're on different ones I'd be happy to share my experience if you have questions. I participated in a virtual support group run by breastcancer.org for those in treatment this week and the moderators shared some great links about different treatments - here are the ones for TC if you want to take a look:
Looking forward to connecting and sharing experiences 😊
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Starting chemo January 27th. AC dose dense... 4 treatments, 1 every 2 weeks, followed by taxol every week for 12 weeks. Already had double mastectomy with tissue expanders December 20. 3mm mucinous adenmocarcinoma in left breast and 6mm triple negative IDC in right breast. No lymph node involvement.
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@daisysmum thank you for the links! I'll look them over this weekend.
To add to it, they apparently didn't provide all the info needed for my cold cap so now I'm worried I won't get that in time!
When I asked what to bring for my first session, they said whatever I want 🤣 so I appreciate you giving me some direction.
I hope the switch goes smoothly for you.
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Hi I just met with my breast surgeon and we discussed that I am in the range where they would advise chemo - I had DCIS and lumpectomy last month, was feeling good until this news. I meet with the chemo/medical oncologist and I am not sure, if there are questions I need ask her - will she be giving me options to choose from? Also I am pre-menopausal and I understand this will kick me into menopause so appreciate advice on that (I'm 49, was approaching that point anyway most likely). I am sure some of this is on the site so I would appreciate any links to relevant info too. Thanks all!
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Hi @bonkster and @daisysmum welcome to our community, thank you for sharing your experiences. Adding these resources on cold caps ♥️
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@heavans I'm sitting in the chair now wrapping up my first treatment. So far it hasn't been horrible, but I'll let you know over the next week.
I doubt you will get options. My big question was how much cancer would lower my risk on recurrence. The numbers can be hard to understand. As my surgeon advised, it's not enough to hear it will lower it by 50% you need to know 50% of what. Like if you're risk of recurrence is 10% then lowering it by 50% means you've actually dropped your risk 5%. Is that worth it to you?
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My oncologist shared the results from this calculator with me. There are 2 versions and it’s best to discuss your results with your doctor. It gives info on how different treatments impact survival rates but not how it impacts your chance of recurrence. It is also less effective on larger tumours (mine was past the threshold). So it’s not perfect but I liked being able to see how much benefit each part of treatment provides.
Hope you’re feeling well after your first treatment @bonkster ! One thing I learned is take really good notes on your symptoms day by day and tell your doctor about it before your next treatment. Even though I wasn’t throwing up like in the movies I was pretty miserable and debilitated by my side effects first go. My doctor was able to prescribe additional medicines to help reduce the side effects for second round so I could cope better. I’d love to hear about your experience with cold capping when you get to that! I opted not to because of the expense/ hassle and it wasn’t supported at my cancer Center so my husband would have to change out the caps every 20-30 minutes. I lost almost all my head hair and some body hair 2-4 weeks after my first treatment. I shaved to 1/4 inch at the first sign of hairfall which helped but my follicles were so sore a few days before the hair would fall out in those areas. I close shaved the last few stray hairs so I looked less creepy and am more comfortable now. If I did it again I would have close shaved from the start. It was so annoying and painful for those stupid short hairs to be constantly shedding. Got to keep my eyebrows so far so thankful for that!
Good luck with your treatments and decisions everyone! Sending love and healing ❤️0 -
@daisysmum how soon after your treatment did your side effects start?
Great idea about keeping a detailed list. I will do that. I think my sense of taste may already be on the fritz, but nothing else yet.
I totally get the cold capping. I don't think I would have done it if I had to swap them out every half hour.
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@bonkster I’m so glad you haven’t had too many side effects yet! Mine started almost immediately. I had treatment in the afternoon and basically slept the rest of the day but the next day I already had pain and nausea. But every treatment is different and every individual responds differently too. 🤞 your side effects stay mild!!
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Holy hell on a stick! I was pretty pleased with how well I made it through my two days of work after my first treatment. I got some bone aches from the blood cell booster, but nothing too bad.
Saturday morning I realized I forgot my last pill Friday night so it took it Saturday morning not realizing they say to take it before bed because it causes drowsiness. So I slept half the day yesterday!
Also constipation was becoming a real issue. I hadn't pretreated because I figured if I had to go to work, constipation beats the other thing. But I took 2 laxative chews Friday, some help but not a lot, then two Saturday. Saturday's hit!
I got up to go to the bathroom in the night and got hot and shaky with a roaring in my ears. Then I apparently passed out because I woke up on the floor with the sink running! Half an hour later, I tasted blood and realized I bit my lip something fierce on the way down!
I don't know if that was laxative induced or some sort of hot flash related to the zolodex or just plain bad luck. It's kind of a good story, but I'm a little freaked out about what to still brace myself for!
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Ah! @bonkster that is really scary! To echo @lg2009 hope you had someone available to support you! I get a lot of dizziness and lightheadedness after chemo so I find I have to transition from laying down to standing very slowly, sitting up for a few minutes in between. Hope you are okay.
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